Hi everyone
I am posting my story so far in the hope that it is useful for anyone starting out here. I have been grateful for all the stories and advice that I have read here, they have been a great help
I'm a 58yo man, living in London, married with two children (18 & 20). I had noticed some ambiguous symptoms earlier in the year (wind, frequency, some blood in stools) but put them down to stress at work/bad diet/IBS/longstanding haemorrhoids. The were more persistent than usual though and I was planning to see the GP (honest!) when the FIT screening test arrived by chance at the end of June (the screening programme has recently been extended to under 60's as I understand it). So I did the test in the first week of July and (because of blood in stool) was half expecting a positive result, which duly came a week or so later. The colonoscopy took place at the beginning of August (could have been a bit sooner but we had a very welcome holiday in between) and found some polyps and a tumour low in the sigmoid, very close to the rectum. They marked the tumour with tattoo ink, and when it was all over, told me they thought it was cancer, but very operable. It was confirmed as cancerous after a couple of days and I had a CT scan to look for any spread.
Oddly they then asked me where I would like to go for surgery ('we've only got two surgeons here so it would be a long wait') and we agreed on one of the larger London teaching hospitals, close to home. There was a short wait while my details went over to the multi-disciplinary team there, but soon they were in touch to say that they would operate soon, and that there was no sign of spread to other areas (a great relief). Then a flurry of appointments to meet the surgeon, enhanced recovery team, stoma team (as an ileostomy was quite likely), pre-op assessments etc. I was admitted in early September (so only two months from doing the screening test). At this point the grading was stage 3 based on the scans.
During this time I told my wife (who new about the colonoscopy) and children, who took it well. My approach was that as no-one (not even the experts) knew what the long-term implications would be, then there is no point in fearing the worst. I was (and still am) taking it one day at a time. I have been using the Headspace meditation app for a long time, and followed their 'Coping with Cancer' module, which was quite helpful. In particular it helped my decide to tell friends about my situation; normally I am quite private, and don't like being made a fuss of, but it was absolutely right to tell them as their kindness and support has been so useful. I have two friends with permanent stomas, and some doctor friends, who could give more specific advice, but even kind WhatsApp messages make a difference...
So I had a robotic keyhole operation that removed part of the colon and, as it was so low, gave me a temporary ileostomy. I was in hospital for 5 -6 days, then home, waiting to see if chemo would be needed. A couple of weeks later I heard that there was no evidence of spread in any of the lymph nodes that they removed, so it wouldn't be needed and it was downgraded to stage 1. The was obviously a relief, but I was (I think) mentally ready for chemo; anything is better than the alternative...
The stoma has been pretty manageable (huge thanks to support and advice from the stoma nurses) and low fibre diet is fine (if a little dull) but once you get used to it and the output is more predictable, it is a lot less worrisome. I was pretty much up and about after 4-6 weeks and doing targeted but gentle exercises every day
So I am soon going back in to have the ileostomy reversed and see what life is like with a bit less colon. They have said it will take up to two years to settle down, and that LARS is a possibility, but 'there are things we can do if that happens'.
I know I am lucky to have been diagnosed early, to have supportive family and friends, to have good hospitals nearby and to have found this community. I know that not everyone has this luck, but it may be helpful to have the full range of experiences on here so newcomers don't just hear the worst.
The advice I would pass on: take one day at a time, tell your friends, don't eat ham or bacon (nitrates are carcinogenic), ask the doctors and nurses as many questions as you need, and wear front opening pyjamas in hospital... If there's anything else you would lie to know, please do ask
Thanks for listening
